Transcript psychological, social, behavioral, and spiritual aspects of cancer

Best Practices
in
Psychosocial Oncology
Katherine Walsh, PhD, MSW, LICSW
Professor, Springfield College School of Social Work
Past President: Association of Oncology Social Work
Psychotherapist: Private Practice
Summit Hungary 2008
Cancer Incidence and Mortality: USA
Racial or Ethnic Variations‡
All cancers combined, men:
Incidence rates are highest among black (607.3), followed by white (527.2), Hispanic (415.5), Asian/Pacific Islander (325.8),
and American Indian/Alaska Native (288.6) men.
Death rates are highest among black (303.5), followed by white (224.8), Hispanic (152.8), American Indian/Alaska Native
(151.2), and Asian/Pacific Islander (137.0) men.
All cancers combined, women:
Incidence rates are highest among white (405.9), followed by black (379.7), Hispanic (318.6), Asian/Pacific Islander (267.4),
and American Indian/Alaska Native (242.2) women.
Death rates are highest among black (182.8), followed by white (156.4), American Indian/Alaska Native (110.7), Hispanic
(101.9), and Asian/Pacific Islander (92.3) women.
Among four races and Hispanic origin:
American Indian/Alaska Native men have the lowest incidence rates of cancer; however, Asian/Pacific Islander men have
the lowest death rates from cancer.
White women have the highest incidence rates of cancer; however, black women have the highest death rates from cancer.
American Indian/Alaska Native women have the lowest incidence rates of cancer and the third-highest cancer death rates.
A Historical Perspective on Psychosocial Cancer Care:
United States of America
First psychosocial research
in oncology published by
psychiatrists and social
worker team
Psychosocial Oncology
First Pediatric
Oncology social
Worker hired in
Boston
1950s
Introduction of
chemotherapy
in
Rx of
Cancer
APOSW
Is
formed
1960s
Combined
Therapeutic
Modalities
Increase
Survival in
Childhood
leukemia
1971
1972
“War on
Cancer,”
P.L. 92-218,
Nixon admin
National Cancer
Plan includes
rehabilitation,
cancer control,
and psychosocial
research
Oncology
The
Psychosocial
Oncology
Group is
formed
1976-1981
IPOS
Is formed
AOSW APOS
Is
Is
formed formed
1984
1990s
First
decrease
in cancer
mortalities
in US
Twenty to Twenty-first Century
National Coalition
For Cancer Survivorship
(NCCS) sponsors first
March on Washington
2000
Institute of
Medicine
Report
Mental Health
Parity Act passed\
By US Congress
Patient Navigation
Act passed by
US Congress
2006
2007
Institute of
Medicine Report
2008
Factors contributing to Greater Emphasis on
Psychological and Social Issues in Cancer
• Societal Attitudes shifting away from fatalism about cancer
• Trend toward revealing diagnosis in many countries
• Patient participation in treatment decisions (autonomy, informed
consent)
• Increased doctor-patient dialogue
• Development of valid instruments for measuring subjective
symptoms and quality of life
• Recognition that effective cancer prevention and screening is
dependent on changing behaviors
• [Increased awareness of psychosocial sequelae of cancer and cancer
treatment accompanying increased survival]
Holland, Jimmie (Ed.). (1998). Societal view of cancer and the emergence of psychooncology. Chapter 1 in Holland and Jacobson, Psycho-oncology. New York: Oxford
University Press; p.9
Factors influencing Funding and
Psychosocial Oncology
• Federal Government Legislation & Funding
• Government Insurance for Elders and Disabled
(Medicare) and the poor (Medicaid)
• For profit insurance companies (insurance
provided through employers)
• For profit Pharmaceutical and other Suppliers
• Non-profit Organizations (American Cancer Society,
LAF, Cancer Care, Wellness Community, Hospitals who employ
Physicians, Psychiatrists, Psychologists, Social Workers)
• Private Practitioners (Physicians, Psychiatrists, Psychologists,
Social Workers, Complementary care providers-eg massage
Location of Service Provision
Physician
Practionter
Offices
Non-Profit
Organizations
International
National
Regional
State
Community
Institutions
For Profit
Organizations
Acute Hospitals
International
National
Regional
State
Community
(NCI CCC)
(For Profit)
(Community)
Chronic/Rehab
(Skilled Nursing)
Clinics
Four Broad Areas of PsychoOncology
• Psychosocial oncology services
for patients (and families)
• Education and training programs
• Research addressing psychosocial
issues
• Publications of research and
scholarly papers
Holland,J. (1998) p. 11
ADVOCACY
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To influence Policies and Funding
To reduce health care disparities
To improve quality of care
To increase access to psychosocial care for all
To fund psychosocial research
To support education and training of
psychosocial oncology experts
NASW, AOSW, APOS, NCCS, NPAF, C-change
AOSW Association of Oncology Social Work
Mission: To advance excellence in the psychosocial care of persons
with cancer, their families, and caregivers through: Networking,
Education, Advocacy, Research, Resource Development
Vision Statement
AOSW envisions a global society in which oncology care meets the physical, emotional, social
and spiritual needs of all people affected by cancer.
AOSW Goals
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Increase awareness of the psychosocial effects of cancer.
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Advance the practice of psychosocial interventions that enhance quality of life and recovery of
persons with cancer and their families.
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Foster communication and support among psychosocial oncology caregivers.
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Further the study of psychological and social effects of cancer through research and continuing
education.
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Advocate for programs and policies to meet the psychosocial needs of oncology patients and their
families.
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Promote liaison activities with other psychosocial oncology groups and professional oncology
organizations.
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Promote the highest professional standards and ethics in the practice of oncology social work.
IPOS
International Psycho-Oncology Society (IPOS) was
created to foster international multidisciplinary
communication about
• clinical,
• educational and
• research issues
that relate to the subspecialty of psycho-oncology and
two primary psychosocial dimensions of cancer:
1) Response of patients, families and staff to cancer and
its treatment at all stages;
2) Psychological, social and behavioral factors that
influence tumor progression and survival.
American Psychosocial Oncology Society
• The mission of American Psychosocial Oncology
Society is to advance the science and practice of
psychosocial care for people with cancer.
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This includes:
Providing a forum for professionals and individuals interested in the areas of
psychological, social, behavioral, and spiritual aspects of cancer;
Raising the level of awareness of health professionals and the public about
psychological, social, behavioral, and spiritual domains of care for patients with
cancer
Developing and implementing educational programs for health professionals,
patients, and the public on the psychological, social, behavioral, and spiritual aspects
of cancer
Developing a research agenda to be used as a guide for scientific study in the field
Developing standards of care for the management of the psychological, social,
behavioral, and spiritual domains of cancer
Assuring attention to the psychological, social, behavioral, and spiritual domains in
the evaluation of the quality of care for patients with cancer by regulatory agencies
Exploring innovative methods to enhance the recognition and treatment of
psychological, social, behavioral, and spiritual aspects of cancer
Promoting education and training of health professionals in the psychological, social,
behavioral, and spiritual domains of cancer
Addressing the special needs of children, the elderly, and the underserved.
Model of Psychosocial Oncology Research
Variables
Independent
Mediating
Outcome
Personal
Medical
Cancer
Disease and
Treatment
effects
Social
Quality of Life
Survival
Economic
Life Stresses
Interventions
Bereavement
( Adapted from
Holland, p. 13)
Complexity of Cancer
The complexity and variability of
psychosocial issues associated with
cancer has created the demand for highly
skilled practitioners who are trained to
provide multilevel assessment and
intervention throughout the illness
continuum. (Smith, Walsh-Burke and
Cruzan, 1998)
Psychosocial services through
the continuum of cancer care
Prevent High Risk
Screening for
tion
Psychosocial
Genetic Distress
Counsel
ing
Pre-DX
DX
Comprehensive
Psychosocial
Assessment
Counseling
Remission/ Recurrence
RX
Community
Organization/
Coalition
Building
Pt/Caregiver
Public
SW Students
Individuals
Families
Groups
Treatment plan
Education
SURVIVORSHIP
EOL/Palliative CARE
BEREAVEMNT
Adv Directives
Patient
Navigation
Cancer
Screening
Events
Case
Management
Referral, Linking, Advocacy
Prof Ed
Research
and
Publication
Discharge Planning
Program Development
Supervision
Administration
Evaluation
Legislation/
Policy
Interdisciplinary Team Collaboration
Screening
Assessment
Case Management
Medication management
Counseling and other
Psychosocial Interventions
Financial Assistance
Education
Advocacy
Research
MD
Social Work
Psychologist
Patient/Family
Nursing
Spiritual
Counselor
Interdisciplinary Collaboration
“ Patients who are significantly depressed or experiencing
severe anxiety and who are not responding to
counseling or other psychosocial interventions should be
discussed with interdisciplinary colleagues. There is a
risk of suicide for those experiencing depression in the
context of a life-limiting illness and suffering can be
alleviated through appropriate intervention. Pain and
fatigue can be contributing factors to anxiety and
depression and addressing these is essential
Psychiatric referral may be advisable to address the
pharmacological agents for treatment of depression or
anxiety. There are a variety of anxiolytic (or anti-anxiety)
and anti-depressant medications that can be helpful in
alleviating anxiety.
AOSW Social Work and End of Life course www.dynamic-learning.com
Scope of Practice
1. Services to cancer survivors, families, and caregivers through clinical practice
providing comprehensive psychosocial services and programs through all
phases of the cancer experience
2. Services to institutions and agencies to increase their knowledge of the
psychosocial, social, cultural and spiritual factors that impact coping with cancer
and its effects, and to insure provision of quality psychosocial programs and
care.
3.Services to the community through education, consultation, research and
volunteering to utilize, promote or strengthen the community services, programs,
and resources available to meet the needs of cancer survivors.
4.Services to the profession to support the appropriate orientation, supervision and
evaluation of providers in oncology; participate in and promote student training
and professional education; and advance knowledge through clinical and other
research.
(AOSW) Scope and Standards of Practice (1998)
AOSW Standards of Practice
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Use of high risk screening criteria to identify survivors and families in need of Social Work
services.
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Completion of a psychosocial assessment to determine survivor and family’s strengths
and needs relative to coping effectively with cancer diagnosis, treatment and follow-up
cares.
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Development of a multidisciplinary care plan with survivor and family input and based on
mutual goals.
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Use of a range of therapeutic and other interventions, including supportive counseling,
group work, and education to address issues in each phase of the illness.
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Provision of pre-admission, transfer, and discharge planning.
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Provision of case management services.
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Provision of direct assistance to meet financial, transportation, lodging and other needs.
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Advocacy to remove barriers to quality care, to address gaps in service, to help survivors
and families secure the protection of existing laws, and to work for any changes needed to
policies, programs and legislation.
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Involvement conducting and publishing research to advance knowledge about the impact
of cancer, refine interventions, and evaluate practice outcomes.
1. Services to cancer survivors, families, and
caregivers
through clinical practice providing
comprehensive psychosocial services and
programs through all phases of the cancer
experience
Example:
Services to
cancer survivors,
families, and
caregivers
The Cancer Survival Toolbox® is a free audio
program designed to help cancer survivors and
caregivers develop practical skills to deal with the
diagnosis, treatment and challenges of cancer.
www.cancersurvivaltoolbox.org
The Toolbox is made possible by
unrestricted educational grants from
the Amgen Foundation and the
EliLilly and Company Foundatio
2. Services to Institutions and Agencies
The goals of practice in providing to institutions and agencies are:
• To insure that the agencies and institutions are responsive to the needs of both individual
cancer survivors, families and caregivers, as well as groups.
• To contribute the multidisciplinary effort to provide quality medical psychosocial care to
oncology survivors.
• To assist social work colleagues and members of other disciplines to manage the stress
of clinical practice.
The functions necessary to such services are:
Education and consultation to professionals and staff regarding the biopsychosocial,
environmental, spiritual, and cultural factors affecting cancer care.
Collaboration with other professionals in the delivery of quality psychosocial care,
education and research.
Recording, statistical reporting, and evaluation to improve services, assist in identifying
gaps in services and programs, and assure quality care.
Development of programs and resources to address the needs of cancer survivors.
Provision of support services to aid in stress management.
Example:
Service to Institutions
and Agencies
3. Services to the Community
Goals
Assure that community programs and resources address and are responsive to
the needs of cancer survivors, families, and caregivers.
Provide expertise to communities as they work to assist cancer survivors.
Functions
Education of communities to increase awareness of the psychosocial needs of
cancer survivors, families, and caregivers.
Collaboration with community agencies to remove barriers to cancer
prevention, screening and early detection, and access to care.
Collaboration in the development of special programs and resources to
address community-based needs.
Consultation with voluntary cancer agencies, such as the American Cancer
Society and the Leukemia and Lymphoma Society to provide community
education and develop programs to benefit cancer survivors.
Examples: Service to the Community
http://www.helpstartshere.org/health_and_wellness/can
cer/resources/understanding_cancer_course.html
Online Courses: Understanding Cancer Course :To understand cancer and cancer care for
individuals with cancer and their loved ones
http://www.naswwebed.org/
Online courses: Achieving Cultural Competence to Reduce Health Disparities in End of Life Care
http://www.apos-society.org/professionals/meetingsed/webcasts.aspx
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Multidisciplinary Training in Psycho-Oncology
The "Multidisciplinary Training in Psycho-Oncology" is offered by the APOS Institute for Research and
Education (AIRE) at no cost and is intended to train cancer care professionals in key areas of psychosocial
oncology. The program includes fifteen Webcast lectures in the five following tracks.
Introduction to Oncology
Program Administration
Symptom Detection and Management (eight webcasts)
Interventions (four webcasts)
Population-Specific Issues
Example: Cancer Care
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ICAN
Teleconferences
Financial Assistance
Online Support Groups
Individual, Group, Family Counseling
Special programs serving Diverse
populations
• Doula programs for End of Life Care
http://supportgroups.cancercare.org/index.php/topic,1267.0.html
Services to the Profession
The goals of providing services to the profession are:
To assure that oncology social workers have the necessary knowledge, skills, resources, time, funding,
and support to deliver quality psychosocial services to all cancer survivors, families and caregivers.
EXAMPLE
Oncology Social
Work Brochure
Produced by NASW
AOSW
NASW Public Education
Campaign:
Oncology Social Work
Advertisement
Example: IPOS Multilingual
Multidisciplinary Online Lectures
Új!
"A Daganatos Betegség Mint
Családi Probléma"
by Lea Baider PhD
Új!
"Veszteség és Gyász"
by David Kissane MD
Translator: Tamás Halmai
IPOS Reviewer: Katalin
Muszbek MD
Narrator: Zsuzsa Adorjáni
(Adorjáni Zsuzsa színészno, a
Magyar Hospice Alapítvány
támogatója)
Translator: Tamás Halmai
IPOS Reviewer: Katalin
Muszbek MD
Narrator: György Csapó
(Csapó György színész, a
Magyar Hospice Alapítvány
támogatója)
"Communication and Interpersonal
Skills in Cancer Care" by
Walter F. Baile, MD
Translator: Dr. Mária Molnár
Narrator: György Csapó
"Anxiety and Adjustment Disorders in
Cancer Patients" by Katalin
Muszbek, MD
Translator: Tamás Halmai
Narrator: Zsuzsa Adorjáni
"Distress Management in Cancer" by
Jimmie C. Holland, MD
Translator: Tamás Halmai
Narrator: Zsuzsa Adorjáni
http://www.ipos-society.org/professionals/meetings-ed/corecurriculum/core-curriculum-pres.htm#Hungarian
Case Example: What this means for the
Patient and Family
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32 yr old caucasian nurse discovers lump during pregnancy mamogram +
dx w triple negative breast ca in 8th month of pregnancy 4/07
(risk factors=age, pregnancy)
Husband is psych nurse. Insurance through his employer Both have hx of alcohol
abuse in 12 step recovery (risk factor) Pt unemployed (socioeconomic risk factor)
Delivers healthy baby 5/07
Mastectomy and reconstruction 6/07
Begins AC and Herceptin after birth 7/07
Sees osw in clinic-distress screen= + anxiety
Case management by OSW begins ; given Cancer Survival Toolbox
Referred to support group, attends 2x
Referred to family retreat program, d/n attend
Referred to Licensed Independent Clinical Social Worker for psychotherapy and
begins 9/08
Completes chemotherapy 10/07, Completes reconstruction 11/07
Husband self-refers for counseling 4/08
Recurs w metastasis to liver, lung, bones 6/08
Marital counseling session w husband 6/08
Radiation to bones begins 7/08
Herceptin,Zometa, Taxol begin 8/08
Acupunture, massage, self-hypnosis begin, psychotherapy continues
Psychotherapy
• Cognitive-behavioral therapy for anxiety
(Cognitive restructuring, progressive
muscle relaxation and guided imagery)
• Solution-focused marriage therapy sessions
• Motivational interviewing for cessation of alcohol
and tobacco use
• Self-advocacy training for adequate medication
for side effects of chemo
• Advocacy for financial support in day care
Disability income, Palliative Care
Cancer Patient Bill of Rights